Describing this year would be an interesting challenge as there have been so many high and low moments throughout 2021. There have been extremely joyous and happy moments and there have been extremely sad and low ones, too.  

This is a pivotal point in the year as we embark on closing the chapter to 2021 and embracing a new year ahead. Realizing that things are still uncertain can cause a great deal of anxiety and stress for many of us.

As another year comes to an end, I reflect on memories from 2021. Since my Chiari Malformation, PoTS and EDS diagnoses, I desire reflection more each year. Those of us with rare diseases often get caught up in the mundane moments of being a patient. Whether this means taking handfuls of medications around the clock, undergoing multiple tests, or attending myriad doctor appointments, it can become redundant. If we aren’t careful, it’s easy to survive only as a patient while missing out on the outside world and our little blessings.

However, this year was unique for my husband, Jason, and I. If I were to sum it up, I would say it’s been a wild and crazy ride, full of surprise blessings.

About this time last year, I was beginning the long road to recovery from brain surgery for Chiari Malformation. It was a painful four days in the hospital followed by a rush back to the hospital for a blood infection. Fortunately we caught it early enough and I was healing once again after some strong antibiotics were flowing through me.

Thankfully, I’m doing much better medically than this time a year ago. We are beyond grateful for that blessing and many others. Gratitude is finding blessings amid the storms. Starting my day with a gratitude journal sets my mindset for the day. Yes, my TBI or EDS often takes over, and things can go downhill quickly. But I choose to find the blessings among the trials and tribulations.

Speaking of tribulations, we also experienced heartache with the loss of my sister in law, Angie. Jason and the entire family were devastated by the loss of his one and only sister. Such a beautiful, sweet soul. But her memories will live on in our hearts. Angie was only one of several we lost to COVID in our family. We continue to mourn the lives lost and cherish our memories with them, while celebrating those whose lives have just begun.

As I continued my recovery from brain surgery, Jason and I took a chance and moved out of our small apartment and into a house. While it was stressful planning for the move on short notice, we had always planned to move back into a house one day. Although this was only in August, I am grateful for the improved quality of life we have already noticed in our daily lives.

We chose to do this for ourselves. The pandemic has been extremely painful for us, but it has also reminded us that life is too short. After my diagnosis, we craved that peace.

Life with chronic illness and pain is a beast. But reflections remind us of the beauty within the beast that we may have missed. There is currently no cure for Chiari, and now I have recently been diagnosed with CRPS of which there is no cure either. All I can rely on is treatments. But without them, I wouldn’t be here. I’m grateful to have access to lifesaving medications and insurance that helps to cover the high cost. My chronic pain is daily but manageable, and I choose to persevere.

Nothing about these diseases are a given; I find that patience is essential. Yes, my patience is put to the test many days. This, too, is a blessing in disguise.

Some of you may have had a turbulent year. It’s OK if you can’t find blessings to reflect on right now. Please know that support is here if needed. We may not know what 2022 will bring, but we can still choose hope and continue this fiight together with gratitude, patience, grace, and love.

Happy New Year. See you all next year.